Last Tuesday, Chris Ponting plus Sonya & Andy also presented a concentrated version of their SequenceME information for one of the project's funders, SolveME, with an introduction by Solve's Dr Sadie Whittaker. Watch on Youtube: youtube.com/watch?v=v6VQ2593…

This is even worse in my opinion, because they integrate LC care pathways. People presenting as allies (Bateman, solveME are involved), and throwing all the LC that don’t present with PEM under the bus. Finally, they propose the same thing as psychologisers.

Respectfully, you're asserting a definition - which may be true, but why is your definition any more true than anyone else's? Because the symptom has no objective test, it's open to interpretation. In other words, consensus. And my point is, that there's really no consensus here. CDC: "PEM is worsening of ME/CFS symptoms after physical or mental activity that wouldn’t have caused problems previously." CDC: "Post‑exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion that would have been tolerated previously. Symptoms typically worsen 12 to 48 hours after activity and can last for days or even weeks." SolveME: " 'worsening of symptoms following even minor physical or mental exertion' with delayed onset and duration of 'days or even weeks.' " Bateman Horne: "PEM is the worsening of a patients’ symptoms and function after exposure to physical, cognitive, emotional, or orthostatic stressors that were normally tolerated before disease onset" NICE: "The worsening of symptoms that can follow minimal cognitive, physical, emotional, or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post‑exertional malaise may also be referred to as post‑exertional symptom exacerbation." Whereas other people can and do claim that post-exertional symptom exacerbation is something completely different. OMF: "marked by a significant worsening of symptoms or the development of flu‑like symptoms following physical or mental exertion" At least psychitry has the DSM to drive consensus. We don't have that here. These are similar, but differ in key ways.

Rob Wust (pd by PatientLed, SolveME) is the new Leonard Jason, manufacturing trash studies to falsely conflate MECFS in LongCovid His last study was such an offense to science that other resarchers *publicly contested it. So much wrong w/this study, too. healthrising.org/blog/2025/0…

After decades, some researchers suddenly discover love for MECFS, while dropping now Long Covid entirely. Suspicious? And when MECFS is no longer useful to them, it will disappear again too. Don't worry about that. SolveLC or SolveME turns into SolveNothing and SlowDying.

El primer premio de "SOLVE M.E." es ganado por la Dra. Akiko Iwasaki, por su estudio de EM sobre autoanticuerpos IgG (que atacan nervios y cerebro) de LC inyectados en ratones. Se vio el fenotipo idéntico a los pacientes: dolor real, fatiga, pérdida de coordinación. #SolveME

And note that the #MECFSCult insisted on pushing the fully astroturfed, trash Moonshot legislation along with it's completely ridiculous UNDER funded research ask - while a legit and comprehensive Long Covid bill (modeled after the in-force Ryan White Care Act) that included such supports, contingencies, and many other guarantees had already been compiled by grassroots efforts of pwLC (who were sick AF in their beds throughout). It also dedicated it's funding to LONG COVID and not 15 other illnesses, unlike Moonshot's bullshit. These are the Long Covid patients that our wonderful pwME allies, like cyberstalker and SolveME sycophant Mon Chéri here, stalked, doxed, endlessly harassed, and put on mass block lists. Now she's pretending like innocent little pwME that nobody wanted fuckall to do with at any goddamned point in this adventure, and who have no business being involved in any of this, that they're the piñatas? Completely delusional. Why don't you all actually GTFOH and see if ppl continue to "target" you. I mean, that of course is what ppl who hAtE pPl wItH mECfS would do, right? We all have long criminal records of pre-2020 mecfs hate crimes, surely. 🤡

Could you imagine not being able to use your phone for a year because the neuroinflammation was so bad that it hurt your eyes and brain? Or get out of bed because your connective tissue and spine were under assault? This was reality for James Strazza, a poet and musician who died at age 38 of complications of very severe Myalgic Encephalomyelitis. He fought a very long and public battle to help gain awareness of this awful disease. His family is live-streaming his memorial on May 31 on Instgram and encourages everyone in the ME/CFS community around the world to attend. #millionsmissing #solveME

On the verge of bankruptcy, but after a year of combing the world for answers, the Xolair Doxycycline Qulipta Celebrex HistaQuel Perrin Technique (i.e., glympathic drainage) combo is doing work. We are already coming off of my Topamax. Adding doxy to my mast cell regiment was the exact thing I needed. I am still struggling with cerebral hypoperfusion, but that's why we have the vascular and spine team. I wanted to see if it could be done. I did this for everyone who has died trying. There's been many. I share my story for them and everyone who comes after me. #millionsmissing #solveME

It’s called “Complex Chronic Illness” now. No one says infection associated anymore. That was an incorrect political talking point SolveME made up to try to loop in more funding for ME while misrepresenting millions of people.

hEDS/MCAS that leads to ME can physically and cognitively disable and kill you. Painfully and slowly. These conditions need to be treated with the same seriousness and urgency as MS or lupus. I'm not asking for special treatment; I'm demanding equity in immunological care. These are complex, chronic, multi-system illnesses that destroy lives. People deserve competent and compassionate multidisciplinary care (rheumatology, allergy/immunology, neurology, cardiology, GI, pain management, neuro/ortho/vascular surgery, rehabilitative therapies tailored to hypermobility, etc.), faster diagnosis, and aggressive symptom management while research catches up on root causes and more effective treatment options. People are bedbound ill. Most people just have access to over-the-counter medications, while very few enjoy next-gen biologics and corrective surgeries. Enough is enough. @NIH @CDCgov @US_FDA @MastCellAction @DrOzCMS @CMSGov @calleymeans @SecKennedy @ACRheum #solveme #millionsmissing

I'm waiting for SolveME/CFS to proclaim "THIS IS GREAT PROGRESS. We got him to say CFS"

The one who admits to lying for years about being in bed with infiltrators and astroturfs, and is trying to frame that as admirable. 😂 The one who had no problem with SolveME Cynthia Adinig’s attacks and harassment of Dara, Dr Marjorie, and the entire LC/DC movement itself (incl LCAP & Devin) but now wants to play the persecuted one because she got flat busted for lying her ass off to the entire timeline. Repeatedly. The one that’s BFFs with LCAP and Devin Russell well after they outed themselves as shills, liars, and thieves. Ring any bells?

Please share. @BridTweets38 @MEActMaryland @LizMEActGA @meactionga @PlzSolveCFS @MEAction_TN @MEActNet Funds raised will be donated 50/50 between SolveME and MEAction. See sign up form.

In March of 2020 ME Action, SolveME, & OMF picked the dumbest ppl they could find in the Body Politic support group (Lisa McCorkell, Hannah Davis, Gina Assaf...) and have been running the astroturfs @patientled as their diabolical lil puppets ever since.

ALT text for the screenshot: Alba @AlbaDocherty "iT's just the pAtlEnTs SolveME: $550k on literal PROFESSIONAL LOBBYISTS since 2020, not counting their CEO who is A LITERAL LOBBYIST, so her salary isn't incl in that and neither is the...